Charlie Gard

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ubersonic said:
The experts in the type of condition he has, the whole reason his parents wanted to take him from one world class hospital all the way to another world class hospital was so he could be treated by the best doctors in the field (while the staff at GOSH are marvelous they are not really trained/equipped for the type of condition Charlie has nor have they encountered it's type much before).
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But nobody has really, as far as I'm aware - there are less than 100 recorded cases,

It also hasn't been demonstrated at any point, that the treatment being offered has worked on a case like Charlie's - even the doctors offering the treatment admitted this.

It's important to remember that the American philosophy of healthcare is vastly different to our own, rather than simply accept the inevitable course of nature - American doctors are far more likely to try and defy reality, by throwing endless treatments at a lost cause - often leaving patients more wrecked than they were before for no real useful outcome, or quality of life - other than maybe some useful data.
 
Evangelion said:
But they're not in dispute with the experts. They're in dispute with one American doctor who had not visited Charlie, had not read his medical information, and had a financial interest in the drugs he was going to use for Charlie's treatment:
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Old information is old, since then that doctor and the others have finally been allowed access to his medical records:

The reason that treatment was not commenced in January or April this year, was that Charlie was found to have ‘irreversible brain damage’ and treatment was considered as ‘futile’. Dr Hirano and Dr Bertini, together with other internationally renowned paediatric neurologists have now reviewed Charlie’s MRI’s and EEG’s which were performed in January and April respectively and they have confirmed that these MRI’s and EEG’s showed NO actual evidence of irreversible brain damage. Unfortunately Professor Hirano did not have access to the raw data and he based what he said in April on reports. We did not have access to these second opinions before the initial trial, hence why we are where we are today. Had we had the opportunity to have raw data of the MRIs and EEGs independently reviewed, we are convinced Charlie would be on treatment now and improving all the time.
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Minstadave said:
Any evidence for that too? What special training and equipment does a paediatric metabolic service need to provide for mitochondrial depletion syndromes?
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Experience in treating patients with mitochondrial diseases, the hospital/doctors they wanted to take him too is the world leader in the field.
 
GOSH had extensive experience in mitochondrial disease. Sending him to the US for no benefit or even worse detrimental effect isn't justified.
 
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Screeeech said:
It also hasn't been demonstrated at any point, that the treatment being offered has worked on a case like Charlie's
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Yes it has, that was the ENTIRE point of giving it too him, because it had worked on cases like his and had a good chance of helping him (in the experts opinion).

I think what you mean is that it was never proven beyond all doubt that the treatment being offered would successfully work in Charlie's specific case. Which is perfectly normal due to him having a rare subtype of a rare disease.
 
ubersonic said:
The experts in the type of condition he has, the whole reason his parents wanted to take him from one world class hospital all the way to another world class hospital was so he could be treated by the best doctors in the field (while the staff at GOSH are marvelous they are not really trained/equipped for the type of condition Charlie has nor have they encountered it's type much before).
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Please cite this expert, thanks
 
ubersonic said:
Yes it has, that was the ENTIRE point of giving it too him, because it had worked on cases like his and had a good chance of helping him (in the experts opinion).

I think what you mean is that it was never proven beyond all doubt that the treatment being offered would successfully work in Charlie's specific case. Which is perfectly normal due to him having a rare subtype of a rare disease.
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No, it hasn't. It's had limited success in treating diseases of this kind and hasn't even tried for Charlie's specific case.
 
ubersonic said:
Yes it has, that was the ENTIRE point of giving it too him, because it had worked on cases like his and had a good chance of helping him (in the experts opinion).

I think what you mean is that it was never proven beyond all doubt that the treatment being offered would successfully work in Charlie's specific case. Which is perfectly normal due to him having a rare subtype of a rare disease.
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The treatment wasn't even at a experimental phase, let alone proven without doubt - so no safety testing or even efficacy testing from what I understand.

None of the people ever treated with the therapy had Charlie's specific condition or were as sick as Charlie was at the point the therapy was considered.

Any hope of it helping him was based on guess work and rather worryingly the person suggesting it would work stood to benefit financially from it.
 
Riddle me this - if the nucleoside therapy was truly going to be beneficial and it can simply be added to his enteral feed, why couldn't this be sent from the US to the UK like any other drug? GOSH have great experience with administering experimental therapies for rare diseases.

Hint - it's got something to do with £1.3 million that was raised.

The GOSH statement is totally damning of the American professor who has drawn this process out by offering false hope and without examining the patient or the medical notes.

What would the media and public say if the parents were 100% convinced that specialist Californian crystal therapy would work with limited expert evidence available?

This court process is in place to give an independent voice to children who have none. Similar processes are in place for adults who lack the capacity to make their own decisions. Parents and relatives don't always automatically make the best decision and in some cases actively endanger or cause harm. Sadly even in this modern world there are charlatans who are willing to prey on false hopes and miracle cures and the courts are there to review all the evidence and make a balanced and fair decision in the best interests of the individual who lacks capacity to make their own decisions.
 
Vonhelmet said:
No, it hasn't. It's had limited success in treating diseases of this kind and hasn't even tried for Charlie's specific case.
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QFT - they had preliminary lab based experimental results. This is so far removed from clinical practice that to declare it beneficial and with a good chance of success is laughable.
 
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tom_nieto said:
Riddle me this - if the nucleoside therapy was truly going to be beneficial and it can simply be added to his enteral feed, why couldn't this be sent from the US to the UK like any other drug? GOSH have great experience with administering experimental therapies for rare diseases.
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I asked that same question on page1
 
ubersonic said:
Yes it has, that was the ENTIRE point of giving it too him, because it had worked on cases like his and had a good chance of helping him (in the experts opinion).
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No it hasn't,

As far as I can tell from reports about the US specialist, the success rate in cases far less advanced than Charlie's was around 10%, where the definition of success was one out of 10 patients being able to breathe without a ventilator - that's it, no other improvement.

What's the point?

From one of the papers;

The specialist, who is proposing to give nucleoside therapy to the 11-month-old, told the High Court via video link his research “clearly indicates” the experimental therapy reduces muscle weakness in patients with a similar genetic disorder.

He said the chance of the treatment’s “clinically meaningful success” was about 10 per cent, based on the findings of a study involving nine patients on life support, of whom one no longer needed a ventilator.
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Evangelion said:
Finally, this poor child can end his suffering with the dignified death his parents have been denying him for so long.
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Have to agree, it's tragic but they just refused to accept his fate. Borders on selfish wasting all of these resources, time and money when there was realistically no hope for him.
 
as bad as this sis going to make me sound, his parents were a disgrace. The quote that is was basically the Judiciary and GOSH fault that he can no longer be treated is at best a fabrication. They were basically hanging on to unicorns from a doctor in the US that hadn't even done an in person examination of him. I hope anyone that has sent any threats to the staff in GOSH get locked up for a long time.
 
Reading the main GOSH statement, it seems pretty clear from the evidence that the parents have been living in a different world;

Charlie’s parents fundamentally believe that they alone have the right to decide what treatment Charlie has and does not have. They do not believe that Great Ormond Street should have had the right to apply to the Court for an independent, objective decision to be made. They do not believe that there is any role for a Judge or a court. They believe that only they can and should speak for Charlie and they have said many times that they feel they have been stripped of their rights as parents.
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At the heart of Charlie’s parlous and terrible condition is the question, how can it be in his best interests for his life-sustaining treatment to be withdrawn? Charlie has been treated on GOSH’s neonatal intensive care unit for many months now and very sadly, the question that arises for him arises for other patients and families at the hospital too. GOSH has treated over a thousand patients with mitochondrial disease and offers pioneering treatment, including nucleoside treatment, where appropriate. Despite all the advances in medical science made by GOSH and the other hospitals around the world, there remain some conditions that we cannot cure and we cannot ameliorate.
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The Judge was provided with these independent reports. But in addition, Charlie’s parents also instructed their own expert. That doctor (who also cannot be named) assessed Charlie in April. He reached the same conclusions about Charlie’s condition as the specialists whom GOSH had consulted
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wildman said:
as bad as this sis going to make me sound, his parents were a disgrace. The quote that is was basically the Judiciary and GOSH fault that he can no longer be treated is at best a fabrication. They were basically hanging on to unicorns from a doctor in the US that hadn't even done an in person examination of him.
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How is it a fabrication? a medical condition such as this is always going to be time sensitive and you can't afford to dilly dally for 6mths.

The parents accepted it was better to let him die based on results the hospital presented in court only a few days ago, up until then both the parents and foreign experts were basing it on old results which were much more promising. There was more than just the US specialist giving the parents optimism and they weren't all financially incentivised like the media is saying to smear him.
 
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